Thursday, September 22, 2011

Simon's special day class happens to be at one of the best public elementary schools in the entire district. We adore his teacher. School is a 10 minute drive from our house. It's in a fancy neighborhood with lots of trees and green open spaces, not freeways and big rigs driving right by like some of the other schools where special day classes were offered to us.

And Simon, after a summer spent with typical kids at summer camps, is kinda leaving the other kids in his class in the dust. And doing his best to show how over it he is when he's at home.

And making us a little C-R-A-Z-Y. (By the way, he could sight read each of those letters.)

Little man is finally starting to make sense (most of the time) when he's chat-chat-chatting. He starts talking, literally, from the minute he wakes up, until he goes to bed. In the mornings, we lay in bed waiting to hear what the phrase of the day will be. Will it be "I'm a scuba diver!", "Go Secretariat!" or "Yo Ho Ho and a Bottle of Dolphins"? He sometimes wakes up in the middle of the night and just has to chat a little before he can go back to sleep.

He's counting to 100 in English, to 20 in Spanish, to 10 in Hebrew. He knows at least 30 words in Hebrew. He's getting really good at electronic puzzles and wants to read endless books with us. He's figuring out how to use full sentences to ask for things and is learning how to manipulate people on the street with his dashing good looks.

He's still the size of a 2 year old and way behind other 3 1/2 year olds in almost every way but dang it if that kid isn't gaining on 'em.

For the last few weeks, Laura has been coming home on Wednesdays (when she picks him up from class to go to feeding therapy instead of him taking the bus home) and voicing increasing concern that he seems like he's "not among his peers". For the first time, it's that he's more ADVANCED. We shot a quick email to his teacher and she confirmed that, indeed, we should talk about maybe having him evaluated again.

This is such good news and...sends us into a bit of a tizzy. We were just getting excited to get into a groove. We know his school, we know his teachers, there have been no glitches with his feedings at school. We got this. And.. I think it's all about to change again.

The thing we're spinning about most is whether or not there will be an appropriate special day class through the district. There is a special day class that is an "inclusion" class, which means that there are 12 typical kids and 6 kids with IEP's. That might be a good option given how much ground he gained being with typical kids this summer, but that's a lot of kids for him to be exposed to germ-wise. We're going to check in with his cardiologist, Dr. Hunkypants, to see if we can take a calculated risk and expose him to more germs in order to catch up developmentally or if we need to still be hyper vigilant. Another option is that if he doesn't need special ed for development anymore but still needs a small class due to germ concerns, we could try to get the district to pay for private preschool. Sounds dreamy, but like a hell of a fight.

Simon has been obsessively watching the final race scene in the movie Secretariat. Like every morning for the last 2 weeks. For those of you who are unfamiliar with the movie, it's about an underdog racehorse who ends up being the fastest horse that ever lived. It's total Disney schmaltz and it makes us tear up every fricking morning. No one believed that this horse would ever amount to anything except for one woman who convinced 2 trainers and a jockey to take a chance on him. They worked with him and believed in him and kept believing in him, even when he seemed to fail. In his final race, Secretariat's jockey took a leap of faith and let him run at a pace that seemed completely impossible to sustain, dangerous even. He ended up winning the race by 31 lengths.

It feels a little like we're in that place of figuring out how much lead to give Simon, how big a risk to take, to let him find his stride. He's certainly chomping at the bit. I fear he might drive Laura to drink if we don't find something better suited for him. We have a meeting coming up with his teacher and maybe another IEP meeting. I have faith that the right choices will be presented and that Laura Fitch will fight to the death to make sure we get the best one. God, I love that woman.

And now, a few photos...

Looking oh so cute in Vermont

Getting some BIG love from Pop Pop

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Laura, Simon and Pop Pop in gorgeous Vermont

Simon looking REALLY unsure about the grasshopper Mommy has on her finger

About Us

Team Shimmy was started the day our baby, Simon (aka Shimmy), became suddenly ill (8/1/08) with a rare heart condition called Cardiomyopathy. That day, friends and family rallied around us to form Team Shimmy. This team, which has grown to include new friends and strangers from all corners of the world, has sustained us with love, food, kind words and listening ears.
We spent 4 tumultuous months in the ICU at Children's Hospital Oakland. Simon has been steadily improving since that day. He was fed through a tube in his belly (a Mic-key) until December 2013, was diagnosed on the autism spectrum, receives various types of therapies and is still on meds. Oh, and he's the happiest, most engaging kid we've ever seen. Jaime (Mama) works in public health and Laura (Mommy), a former school social worker, stays home to take care of Simon (and to take him to his MANY appointments). To see a 10-min documentary about our family, go to www.youtube.com/watch?v=uGh8dFp2oqk.
This blog is a chronicle of our experience thriving in the middle of a nightmare. You'll laugh a lot more than you expect. Promise.
Contact us at lafitch@gmail.com or jaimejenett@gmail.com